What would my parents say?

KaywParents2013I was surprised to wake up to the news that Donald Trump would be our next President. My husband and kids all agreed we weren’t so happy with our options. This year felt very different because the issues weren’t really around political beliefs, but around personality, behavior and ethics. We found little room to really discuss the political views of the candidates.

I know my mom would have cherished a woman President, but I’m not sure what she would have made of the run up to the election. As career Army, I always guessed Dad was a Republican, but it wasn’t something he was likely to discuss. I’m not sure what my dad would have made of Hillary Clinton as Commander-in-Chief, but I do know he was a quiet leader and Donald Trump’s style would have made him bristle.

On days like this I realize it’s the small moments when I sure do miss them. Recognized.

Missing the Mom That’s Sitting Beside Me

momsdayteaThe holiday’s always bring melancholy for me and this Mother’s Day was no different. My church does a Mother’s Day tea and asked us to wear a hat … the bigger and bolder the better. That is a picture of me with my daughter and mom. We spent the early afternoon decorating our hats and arrived to enjoy a normal moment. We had finger sandwiches, tea, cookies and tarts and listened as one of the members played some of my mom’s favorite tunes on the piano.

My mom was a very good piano player. At one point in my life, our basement held two piano’s and my parent’s would spend the evening playing duets. When I was in middle school, my mom was the church organist. She stopped playing the keyboard in her apartment a year ago and doesn’t remember being a piano player anymore.

My mom’s talents have slipped from her grasp. She was an antique dealer, china restorer, bridge life master and taught hundreds of adults how to play bridge. She raised four kids and was very active in the communities we lived while she supported my dad through his military career and beyond.

While she can’t manage these tasks anymore, just getting out and enjoying a simple social event was an accomplishment for us all. I recognize it as the new normal for us, but also am reminded of all we both have lost as dementia steals away my mom. Reflected. 

When You Start to Feel the Losses

dawnIn the past few weeks, I have had a host of good news personally and professionally. My daughter applied and got into the school of her choice starting in 7th grade. My son just found out he got into his first choice for college and is going to be running for a D1 track team. My book hit the best-seller list before we have even started to promote it, and I received an award from the McLean Community Center for Volunteer of the Year.

My sleepless nights began after all this stuff happened. I have always been a good sleeper, and early on found that the more stress I felt, the more my body needed sleep. My mom’s fall has brought on some new complications, but it’s nothing I haven’t had to manage through before.

When my husband comes home he asks what I was doing up at 5:30 a.m. when he left for the gym. “I don’t know.” I know something is bothering me but I haven’t been able to figure it out.

As I’m driving to a meeting it hits me. I can’t share any of the happy news with my parents. My parents were such a part of my children’s lives growing up since they came over weekly for dinner. They knew them well and we could celebrate all the wins — big and small. I’ve told mom about these life events when I visit and she smiles, but it’s not the type of response she would have given had I shared this news with her years ago. I also feel the sting of my dad’s death. He would have been so proud to know that my son went to Nationals for track as well as will be running in college, like he did.

My Pastor recently talked about how children grieve differently. One of the things she mentioned was that often the kids focus on “She won’t be here for graduation” or “He won’t be here to see me walk down the aisle.” It never hit me until today that even adult children feel this way about our losses.

My only joy comes in knowing that at least my dad is smiling down on our good fortune. Sadly, it will be sooner than I probably am ready to have my mom in that same place. Resigned.

The Loss of Your Mom Will Just Rattle Your Bones

skeletonI went to find mom some new shirts that could easily fit over her head. We moved a minimal wardrobe with her to the new community back in January, and now find we need some options because what she has hurts to pull over the large lump on her forehead. She got frustrated by the buttons, so we didn’t move many of the blouses and need some options.

I was very excited to find some cotton pullovers with boatnecks that had pockets. My mom likes to have a place to keep her tissues, although up the sleeve is still a popular option. When I’m checking out somehow I come to tell the woman the purchase is for my mom. I didn’t give any more details but she responds with “Love her while she’s here, the loss of your mom will just rattle your bones.”

I want to tell her I know it will, but I also know she did not want to live like this. I still tear up more often than I would have guessed I would over the loss of my dad – and that was a year and a half ago.

Thanks to those of you that commented and sent me notes. It’s encouraging to know that I’m not alone in my thoughts and frustrations and that many have made this journey and survived.

I want to share what Susan, author of My Alzheimer’s Journey, shared with me. She wrote a daughter’s prayer to god last May. So many of her thoughts resounded within me. Thank you Susan.

dear god
please take
my mother
now and

I can’t bear to see her
suffer anymore
nor can I bear
to see her go

mothers and daughters
are sometimes
swallowed up
by life god

we push
and pull
and try
to find
our way
to détente

but sometimes god
disease finds
us first and
renders us

it steals the
things we
hold dear:

what happened
to dignity god?

is it stuffed in your
back pocket
like a forgotten note
with a grocery list
or phone number
on it?

go away god
if you can’t
keep track
of the notes
in your pockets

no! wait god!
come back!
i didn’t mean it
i made a mistake

take her now god
all these bits and pieces
and fragments of your daughter
who was once my mother

pluck her quick
from her drug-induced trance
breathe her back to life
on the other side

let her sing and dance
with the angels
instead of

free her spirit fast god
from the tangled mind
and weakening body
that imprison her

then again, bide your time
a sedated slumber
is better than a
final resting place
where I can’t
see her face
or hold
her hand
as she

how can her life
end as mine began
with dirty diapers
tentative steps
drooling and trying to find
unknown words?

don’t take her now god
I will miss her
too much when
she goes

leave her
hand in mine
we can shuffle
a little further
on hell’s road
to heaven

we can play a duet
or two

I can read her stories
touch her hair
watch over her
as she did me
when I was
her baby
and she
was not

let her stay
with me
a while longer
before you
take her home
where she longs to go

and when you take her god
don’t take everything

leave a piece
of her within reach
to accompany me
as I have

take her now god
but don’t take
her ever
I will


Dementia and Disagreements: No one wins

unwontictactoeFor me, morphing from adult child to caregiver has taught me much. One of the hardest adjustments is leaving behind your past and learning that as the disease progresses, no one ever wins disagreements. If a discussion is getting contentious, it needs to end without anyone emerging “right”.

This was tough for me to learn because in our family, debates and the exchange of ideas was a tradition at our dinner table – even into adult hood. As mom’s disease progressed, frank discussions, or any disagreement brought out the lion. She would just become combative. Medication has helped and she is much less suspicious and disagreeable now.

It took me time to learn, but I began to redirect, let go and change the topic when a disagreement was coming. I’m not perfect at it, and on a bad day, I still struggle to overcome the old patterns of our decades-old relationship.

While the behavior changes in my mom felt personal, I never felt that way with my dad. You constantly wonder if the disease is just erasing a filter and their real personality and nature is emerging. As my mom has progressed into the disease, I have seen so many other changes that I’m convinced the combative and disagreeable woman my mom can become is not a personality quirk that she hid from me for many years.

In the first few years of the disease when we just suspected something was wrong but had no medical confirmation, I had a lot of arguments with my mom. The inability for us to have a disagreement without being disagreeable was one of the reasons I was sure something had changed with my mom.

We watched and witnessed many changes in our parents and worried for their health and safety. We finally learned that no one wins with dementia. Loser

When you are moving into a disagreement, consider:

  1. Emotions linger so avoid becoming angry or confrontational.
  2. The loss of short-term memory works to your advantage. Consider excusing yourself and going to the bathroom to wash your hands, when you return, you can start a totally new conversation.
  3. Emotions spread, so arrive with a smile on your face and a relaxed attitude.

You are my daughter?

choccoveredberriesI’ve had the suspicion that my Mom doesn’t know my name anymore. She used to use it and hasn’t done so in over a month. When I arrive, the woman who runs a day program for resident’s with dementia is taking a walk with my Mom.

When my Mom sees me she smiles and I get the typical “Hey, I know you.” I respond, “Hello, Mom” and she quickly replies “You are my daughter?”


I knew this day would come. She is quick to follow me back to her apartment when I tell her I brought her some chocolate covered strawberries.

She spends little time in her apartment now. She will usually tell me she doesn’t know where it is and asks me if I will walk her back to her apartment before I leave. She is always asking what she can do. She craves activity.

Thankfully, the community started a program that runs from 9:00 a.m. to 3:00 p.m. that has been keeping my Mom busy. She hasn’t been spending days in bed which is what she used to do before the program kicked off. She doesn’t remember that she’s in the program or what they did that day, but it has made a difference in my Mom. I’m not sure if she’s more accepting because of the disease-state, the medication, or she has enjoyed the benefits from accepting help from those around her.

I know the biggest factor for my Mom is my familiarity with her likes and her routines. While she doesn’t recognize me as her daughter anymore, knowing how to interact with her and avoid trigger points has made all the difference in the calm we enjoy together.

I knew this day would come, but knowing it would arrive doesn’t make it any easier to accept. Bummed. 

Facing the Ghosts of our Loved Ones with Dementia

DadMemoryTwice in the past week I have driven by a bakery that makes saltenas that I took my Dad to in the last month of his life. Right after I was told he had a tumor on his tongue, we had a variety of appointments to figure out what it was and how to treat it. One of the first appointments was a scan to identify the size of the tumor. As I was sitting at the office waiting for him to return with the medical assistant, I did a search on Yelp for a lunch place. The bakery had great reviews and I knew my Dad would enjoy something out of the routine.

I had hoped that the soft beef and potatoes would be easy for my Dad to eat, but he struggled through lunch. He continued to be his strong, stoic self and tried to enjoy the meal. I had no idea how sick he was but immediately recognized that it was just too painful for him to eat. I couldn’t believe I hadn’t recognized this earlier. Just like he hid his dementia, he did a good job of hiding the fact that he wasn’t really eating much anymore. I had noticed that he was losing weight and asked the doctors but they chalked it up to his disease state.

I was surprised the first time I drove by the bakery. I immediately recognized the area and the last time I’d been in this here. When I drove by it again today, tears started to form. I quickly remind myself that my Dad’s in a better place.

I miss his quiet calm and his good nature. I wonder if there will ever be a time when these memories don’t bring tears to my eyes. I’m not sure if that is a good thing. Missed. 

Background: Last year at 5:45 pm on the Friday of Labor Day weekend, the nurse from the medical team at my parent’s retirement community called to tell me they found a tumor on my Dad’s tongue and he needed to get to an oral surgeon ASAP. Over the next weeks we worked to get a diagnosis and determine treatment options. We never made it through the gauntlet to get him into treatment and he died in a hospice facility four weeks later. While I feel regret that I couldn’t have caught this earlier, I had been trying to find out why my Dad was slurring for months and took him to an external doctor for a second opinion. I know that in some ways this was a blessing and he didn’t have to continue to live while the Alzheimer’s robbed him of his self. I’m still a bit conflicted over these events. 

Dad’s not here, but he lives on in many of us.

1970PromotionIt’s my first Father’s Day without Dad.

It was difficult for me to transition from the feeling of loss to find the strength he blessed me with. In memory of Dad, I’m sharing a picture of us at a promotion ceremony from either 1969 or 1970. My two brother’s are there with my Mom, my Dad’s brother and his parents. My Dad’s hand gently rests on my shoulder. I still feel him guiding me through life. He was fun, honorable and continues to live on in the many people who knew him.

Here’s to all the great father’s who have shaped us, guided us and demonstrated how to live a good life. Honored.


Dad Would Have Been 82 Today

img005My father who was diagnosed with Alzheimer’s died of cancer back in September. This is our first birthday without him. It’s taken me some time to digest what I have been saying for many months — he’s in a better place now. He was uncomfortable and couldn’t eat in the final month of his life.

I still smile when I think of the number of times we would show up at an appointment and when asked by the nurse, my Dad would respond “I’m just the driver” and point to me.

My Dad was wonderful. Most of my friends were surprised to find what a kind, silly man he really was.While I miss him dearly — it was difficult to mourn our loss when he was still on this planet but no longer himself because of the Alzheimer’s. I have a lot of wonderful memories and will celebrate the day by reflecting on all the great things he taught me and all the wonderful moments we shared.

I included a picture of a moment a staff photographer captured as I was fixing one of his pins before a parade. Treasured. 

Beauty in the Breakdown – You Sure?

letgoMusic uplifts my mood. It helps me focus and makes me happy. I will typically be listening to techno-pop — it’s better than caffeine if I want a pick-me-up.

I first heard Let Go by Frou Frou when watching Garden State (I thought it was on at the closing of an episode of Gray’s Anatomy — a show I never really watched, but Internet sources won’t validate my recollective memory on that point). It’s been in my head, but never on my iPod, so I finally downloaded it last week. I like the tune and the focus on “letting go and jumping in.”

However, today this song brought me to tears as the words hit me very differently. For a few weeks I’ve noticed a decline in my Mom. When I arrive at her community she is in the living room playing bridge with a new group of residents. Now that she has spotted me, she wants to leave the game, but I encourage her to return – they can’t play without her. She insists we go to her apartment while the bridge group is taking a break. Within a few minutes there is a knock on the door asking her to return and she is really rude to bridge player that has come to invite her back to the game. I decide I have to walk her back to the game and I stay within eyesight so she knows I won’t leave until we can spend some time together. 

We visit after the game is over and she is having trouble talking with me today. I’m confounded and amused as she complains that they were beginner bridge players. She can’t remember what day it is, so I wonder how she can remember her bids and those of her table mates. I’m told long-term memory hangs on and she is a bridge life master. There are so many aspects of her day that are mysteries to me.

After my father’s death, I realized that much of the grieving and acceptance I did as my parents were moving into dementia allowed me to manage while they were still on the planet, but I have been humbled by the depth of loss I have felt over my Dad. If he didn’t have dementia and I was not his caregiver, would his loss be as profound? I shall never know.

As I’m leaving the Assisted Living community today, I play my recently downloaded song. I knew the gist of words, but today I hear there is “beauty in the breakdown” and burst into tears.

This experience has changed me in many ways. I recognize that I’m a much kinder, gentler version of my former self. For that I’m grateful. However, I can’t find any beauty today in the loss of my mother. Searched.

So, let go,
Jump in
Oh well, what you waiting for?
It’s alright
‘Cause there’s beauty in the breakdown
So, let go, yeah let go
Just get in
Oh, it’s so amazing here
It’s all right
‘Cause there’s beauty in the breakdown

Getting used to life without your spouse

I know my 20140205-073220.jpgMom misses my Dad. She never talks about him anymore. She used to ask why he died, but the questions stopped. Her inability to really perceive time might be a blessing since most days she thinks he died years ago instead of months.

I’m still working through my grief. i wonder how grief works when you have dementia?

Several months ago I bought her “shopping list” notepads. While my Mom enjoys the trips, if she didn’t write the grocery list herself, she challenges the validity that the item is needed.

She usually has a list now. It may take her 10 or 20 minutes to find it, but our trip goes much easier when the list is in her own handwriting.

On our last trip. she gave me her list and on the top had written “We (I) need” – I never mentioned it but watch for the moments when I can share a fun story about Dad. Remembered